Assuming Capacity

Author: Sam Sly

A version of this article was first published in Learning Disability Today.

As professionals do we really ‘assume’ capacity? And do we consider the importance of understanding a person’s capacity before and during planning? I’m sadly yet to be persuaded. There is no doubt in my mind that understanding someone’s capacity to make life decisions is key to them getting a good life and our continued failure restricts life options. I believe that as professionals we are failing people in this.

When I meet people in Assessment & Treatment Units to plan their discharge there is one blindingly obvious issue that I come across over and over again and that is that professionals seem to have overlooked or not done enough work getting to grips with a person’s capacity to make decisions about where they want to live, who with and their finances. I wonder whether this is because we are still unclear about the Mental Capacity Act (MCA) or that we don’t understand the significant impact that not having the right structures in place for decision-making can have on a person’s future.

It is a fact that everyone that leaves their parental home or an Institution will need to live somewhere. However, rarely have I come across anyone in these positions where those helping them are crystal clear about the person’s capacity to make decisions about housing. When you think about it there are a wide range of housing options available to people nowadays: living in their own home with a mortgage (the most valued option in our society), renting a home with a tenancy, living with family in the parental home or living in a residential home (the least valued option in our society). Of these options sadly the only ones available to a person where preparation has not happened and it is then decided that they do not have the capacity to understand a tenancy or mortgage is to live at their parental home or in a residential home. The latter being the least valued option and the former being one that is possibly not a life-long desire for many people.

I have also often come across situations when people are in crisis and have to move and it is only at this point that it is realised that the person can’t access the range of housing options because their capacity has not been fully explored and understood and professionals then challenge it, or they misunderstand what level of understanding a person needs to have and thresholds of capacity are raised to far above those we would expect of others. This isn’t fair on people and with forethought doesn’t need to be the case.

Surely, it is a necessity when supporting someone to understand how they communicate and make available what they need to communicate their needs and opinions? Without this level of understanding of someone how do can we say we are helping people be in a position to speak up, have a voice or have someone to speak up for them?

The MCA, I have always maintained, is one of the most exciting and power giving pieces of legislation to come to statute. I remember how thrilled I was to see in law that we would have to assume people had capacity, after working for years within the ‘risk averse’ culture that seemed to grip the learning disability services, especially within health. I remember a place where I worked before the MCA where there were 160 people being supported and not one of them was ‘allowed’ to administer their own medication. This blanket decision had been made by the provider because of the ‘nature of the clients’ nothing to do with the abilities of the individuals themselves.

As a Provider, at the time of the introduction of the MCA, I was enthused to read that it would be our ‘duty’ to help people make decisions by giving them all practicable help before anyone treated them as not being able to make their own decisions. This meant we had to make every effort to encourage and support people to make decisions for themselves and even if a lack of capacity was established it was still important to involve the person as far as possible in making decisions. The MCA told support providers and professionals clearly they had to know people really well and had to use whatever they could in the way of communication aides, support and assistive tech to enable people to make decisions. This was the creative, innovative side to support work; the real nitty-gritty and surely one of the most important principles. So why do we still know so little about people’s decision-making capacity now?

I want to make a plea to you all. Start working to equip people with learning disabilities with the tools, knowledge and anything else that will help them to make those big life decisions like housing, money and health when they are children and way before they reach 16-18 years and need a house, or to make other life changing decisions. And make sure, if after all this a legally appointed person is needed that you get this in place swiftly. If we made this a mandatory part of life planning then we would know people a whole lot better and they would probably be much better informed, empowered and prepared as adults so that those times that situations got to become a crisis would most likely be significantly decreased. After all this is our job is it not?